Refractory Epilepsy Epilepsy Foundation

Another reason for uncontrolled seizures is poor or less than optimal treatment. In other words, the ‘wrong key’ is being used to unlock the door! Common reasons for suboptimal treatment are listed below.

People have been referred to epilepsy centers for brain surgery, when their underlying condition was not epilepsy, but one of the imitators. Experienced clinicians are skilled at using a combination of the medical history, the physical exam and certain laboratory tests to determine whether sudden episodes with alteration in sensation, strength, behavior or awareness are seizures or one of the imitators. But sometimes this is difficult.

Or you really may be locked out. One possibility is that you are at the wrong house. Another is that you are using the wrong key. Perhaps someone inside has engaged the deadbolt. Imagine coming home at night after too much partying, and finding yourself unable to unlock your front door. Refractory epilepsy displays three similar categories.

Some, but certainly not all, are listed here. If seizures are not controlled, then a reasonable first question is: “Are the episodes really seizures?” A number of conditions can imitate seizures. One chart review study by Smith and colleagues in England found that 13% of patients referred for refractory epilepsy did not have epilepsy. An incorrect diagnosis of epilepsy, going to the wrong house, is more common than most people might think.

Seizures can be uncontrolled for four broad reasons.

Many seizure medications have useful actions against a number of different seizure types. Ethosuximide (Zarontin) is good for absence, but not complex partial seizures. Since absence and complex partial seizures can occasionally be confused with each other, there is a chance for using the wrong medicine. Using the wrong medication. But some medicines are not right for certain types of seizures. Carbamazepine (Tegretol), for example is usually good for treating complex partial seizures, but not absence seizures.

Almost everyone forgets to take pills, especially if the pill schedule is complicated. Missing medication is a cause of breakthrough seizures. In the medical field, this is called "poor compliance." Learn about the importance of adherence and ways to make taking medications easier (hyperlink to importance of compliance adherence) It can make a real difference!. Missing doses (poor adherence or compliance).

Complicating factors (illness, sleep deprivations, extreme stress). Triggers may include alcohol, exercise, flashing lights or certain patterns, general illness, heavy breathing (hyperventilation), lowering dose of medicines, taking certain medications, the menstrual cycle, missing medications, missing sleep, recreational drugs, and stress. These again vary with the individual. All too often, a seizure breakthrough is preceded by one of these, or other personally relevant, factors. Complicating or precipitating factors for seizures can make them more difficult to control.

When seizures persist after at least two good trials of the proper drugs at the right dose, a person would be considered to have intractable or drug resistant epilepsy.

People vary widely in their response to seizure medicines. A dose that is too low may lead to seizures. If a dose that is too high for an individual is used, a person will have too many side effects. Inadequate or incorrect doses of medicine. Every medicine has a suggested dosage range, but that range is too high for some and too low for others.

Seizures sometimes are not controlled with seizure medications. A number of different terms may be used to describe these including: “uncontrolled,” “intractable,” “refractory,” or “drug resistant.” How often does this happen?.

True intractable epilepsy is like a bar across the front door. The “bar across the door” is keeping the medicine from working right to control seizures without side effects. Difficulty controlling seizures can result from not tolerating seizure medications or seizures not responding to the medicines.

Not all uncontrolled seizures are considered refractory or drug resistant. For example:.

Polypharmacy is the use of several medications at once to treat the same condition. Polypharmacy and toxicity. Some people require more than one drug to control their epilepsy, but additional medications rarely lead to complete freedom from seizures.